23 Months Old

Miss Maddy is one month shy of being two!  And boy is she giving me a run for my money.  Lots of tantrums and throwing her shoes in public.  I cheated by using this photo which was actually taken yesterday, not the day she turned 23 months old.

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This was the best I got on that day.  She wasn't feeling well and wasn't going to pretend.

This is from a few weeks ago when she had yet another cold.  Every time she coughed, she cried - there's not much I could do for a sore throat.  She's now on allergy medication that doesn't seem to do a thing.  Next month she can start something stronger.

When she's feeling well, she climbs on everything.  She pretty regularly gets up onto the piano.  Sometimes I'll be washing dishes and hear her plunking keys.  Doesn't matter if I move the rocking chair away, she always finds something to use as a step stool.

The other day Mike yelled across the house to me, "Hey, did you know Maddy can get from the floor to the top of the dining room table in under 30 seconds?" Oops, I had figured that out the previous day. Here she had climbed up onto the chair (by herself, no step) and when I ran for the camera she climbed onto the table.  It is really hard for me to get anything done in the house now while she is awake.  She is constantly getting into trouble.

She has been practicing standing up.  Sometimes she gets into a position like this and lets go of whatever is supporting her arms for a few seconds.

This was from the LPA regional earlier this month.  She combat crawled up and down this hall.  She was less timid with the kids this time than at the last LPA event we attended.  She was still too upset to be left in the kids room without a parent though.

Super Why is her new favorite TV show.  At first I thought it's because she figured out how to say "why" but she really seems to like the program.  Yes, she always tries to get this close to the TV set.  No, she does not always stand inside a pumpkin.

Rain

Maddy is in her sassy toddler phase and is also teething, a lovely combination.  Last week, at the end of one very trying day, she was throwing a monster tantrum and wouldn't stop.  I was desperate to calm her down.  It had just started to rain so I took her out to the front porch.  She got quiet immediately.  She wanted to be in the rain.  We went back inside but she wanted to go out again, so we did, and I took this video.

Docs & Therapists

We've lived in one place for about a year now, and during that time Maddy has seen a lot of healthcare providers and therapists.  (Please note: not all achon kids have this many appointments, and some have way more.  Kids are all different, "little" or not.)  Here's a rundown of her doctors and specialists this year...

Pediatrics

She has been seeing the same base pediatrician since we got here.  Dr. V is wonderful.  She has educated herself on achondroplasia, uses the appropriate growth charts, and checks for hydrocephalus.  We had been seeing her every one to three months.  After her 18-month wellbaby checkup we were going to wait until she was two to take her back, but problems with ear infections, viruses and allergies have brought us back several times.

Genetics

We saw Dr. T at the skeletal dyplasia clinic that's part of a local children's hospital.  He was kind of our point of contact there and coordinated appointments with other specialists.  He gave us an overview of achondroplasia and told us what to expect over the next few years.  We were going to him every six months.  He left his position recently and we saw his replacement last month.  The jury's still out.

Orthopedics

Maddy first saw an ortho doctor at the same time we saw the genetics doc.  She sees him every six months and has x-rays of her back taken each time to check for kyphosis and hip problems.  Dr. McC wants her to come back in three months because he hasn't decided yet whether she could benefit from a back brace (she does have a small degree of kyphosis).

BUT... Last winter we traveled to a well-known dwarfism specialist who is also an orthopedic doctor.  Dr. P thinks her kyphosis is minimal and predicts she won't need any intervention.  We are pursuing authorization through our insurance to have Maddy primarily see this doctor instead of the local clinic.

Neurosurgery

Again, through the skeletal dysplasia clinic.  We first saw Dr. M last fall when Maddy was throwing up a lot.  He performed the spinal cord decompression surgery on Maddy last December and we had several follow-ups, the last one being this summer.  Her post-op MRI looked good, so hopefully we won't have to go back to neuro for one or two years (yay!).

Pulmonology

Maddy sees a nurse practitioner in the sleep study clinic at the children's hospital.  She had a sleep study before her surgery last year and will have to go back for a repeat this November.  I hate them.  But they are important, and we had a good experience with the hospital staff.  She will probably need many more sleep studies.

Gastroenterology

When Maddy was throwing up a lot last fall, Dr. V referred us to Dr. R, a pediatric GI doc at the children's hospital right here in Dayton.  He was unfamiliar with dwarfism but did lots of research.  We are both learning as we go.  He started Maddy on reflux meds that helped a lot.  In the meantime, I found several other parents of achon kids who said that throwing up is not unusual for our kids and that she may just grow out of it.  So I'm trying to convince Dr. R that Maddy doesn't need a scope.  She sees him every three to six months.

ENT/Audiology

One of the only specialists that Maddy can see at the base medical center is the Ear Nose and Throat doctor.  Dr. M put in Maddy's ear tubes last fall and she sees him every 6 months.  She needs a hearing test once a year.  Her tubes are still in place.  If she ever needs to have her adenoids or tonsils taken out, we'll have to take her off base to a children's hospital capable of handling her special anesthesia needs.

Developmental Pediatrician

Her dwarfism automatically qualifies Maddy as a special needs kid so she sees the developmental specialist, Dr. S, every six months.  He makes sure she's on track with developmental milestones and has the information from all the specialists she's seeing.  He talks with me about how it may be challenging to discipline her as she gets older because she's "special," but she needs discipline just like any other kid.  I needed to hear that.  He also said that her anxiety around strangers is partially due to her temperament but it's also worsened by all of her doctor and hospital visits.  So the "cry it out" strategy of leaving her with people other than Mommy or Daddy for hours at a time is something he discourages.  He said it may take her some time, but she'll come out of her shell.

And here's the parade of therapists...

PT/OT

Last fall Maddy started seeing Barb, who is an occupational therapist who also worked on some physical therapy issues.  Appointments were once a week for an hour.  Maddy did not like it, despite her having the best OT in the world.  Once Maddy started to sit up on her own, I chose to discontinue therapy.  Barb is the one who first noticed Maddy's loose joints and especially low muscle tone.  Physical therapy is one of those things that parents tend to have strong opinions about.  In Maddy's case, I'm glad we did it, but I'm not sure I'd do it again.

Speech Therapy

We were expecting Maddy to be speech-delayed, so the results of her speech evaluation at 15 months were not a surprise.  She goes to the same private therapy group that did her OT.  She sees two different speech therapists for 30-minute sessions.  So two morning each week I drop Ben off at a morning daycare program through our church so I can take Maddy to speech therapy without Ben taking over.  I am super happy with how it's been going.  Maddy has great therapists and she is making slow but steady progress.  Plus it gets her used to being with adults other than Mommy and Daddy, and she gets to be around other kids a bit.  Her stranger anxiety and shyness are still pretty intense.

Early Intervention

Our county provides either in-home or classroom services for kids Maddy's age.  We chose the classroom, and she's been going for one hour each week since the spring.  It was another opportunity to be around other kids and a different adult.  But budget cuts meant that her original teacher is gone and some of the other kids have transferred out of the class.  A PT, OT, and speech therapist touch base with us during some of the sessions and have been very helpful.  

Feeding Therapy

Maddy finally got authorization for a feeding evaluation (it's normally done at the same time as the speech eval, but our insurance doesn't include it.)  Two different therapists noticed some things about Maddy last month that made them recommend feeding therapy.  It could help to decrease the frequency of her vomiting.  She may not be chewing her food well enough.  And she may have some issues with texture that we're unaware of.  I'm hoping this therapy can be integrated into one of her existing speech therapy sessions so I don't have to add yet another weekly appointment to our calendar.  Juggling both of the kids is getting exhausting.

22 Months Old

Miss Maddy is 22 months old today and totally acting like she's already two.  This month she has been adorable, amusing, and exhausting.

She loves her 'tato heads.  She knows where to put the parts but chooses to put them where she wants.  She can say "eye" and "muh" (mouth) and can identify the nose and ears.

Her first Oreo cookie.  She instinctively took it apart.

With Oreo crumbs on her mouth, doing the sign for "cookie."  Last week she started saying the actual word.  Her speech is really taking off.

Last month she sat on this toy.  Then she figured out how to stand in it.  I snapped a photo before hollering at her to GET DOWN FROM THERE.

The "new" (used) play kitchen.  Maddy loves to open and close the fridge door and stash stuff inside.

After a nap, with her bears.  The one she's reaching for is The Bear, the one she needs every time she goes to sleep.  Bear has been puked on several times and is permanently stained and smelly.  Sometimes she insists on bringing Bear when we run errands.  I'm really scared of losing Bear because Maddy will never ever sleep again without him.

Playing with Play-Doh.  Two seconds later she tried to eat it.

Kids on the Dance Floor

Here are some clips from the reception after my cousin Cory's wedding last week.  Above, my niece Sophie (a flower girl in the wedding) dances around freely while Ben runs up and down specific rows of parquet tiles.


Ben had promised his cousin Emily (his favorite person ever) that he would dance with her.  But he has his own personal dance style.  If you listen closely you can hear her say, "He's not even dancing with me!"


So this wasn't dancing as much as three kids chasing each other while Maddy crawled across the dance floor and we all held our breath hoping she didn't get trampled.  She got scooped up pretty quickly.  I heard that adults finally got a chance to dance after we left.

21 Months Old

Well, I blinked and now Maddy is 21 months old.  She is sick today, so I was lucky to get this one photo of her smiling.

From several weeks ago.  She loves Daddy's Cincinnati Reds hat.

It's so neat to see the two of them becoming friends.

From the day that Ben pretended he was a baby.

This play kitchen was in the basement and the kids rarely played with it.  I moved it to the living room and now Maddy loves it.  Fork, anyone?

This has been The Month of Books.  She usually wants us to read the books to her.  But when she reads them by herself, she uses her hands and feet.

She is convinced that this walking toy is actually a chair.  Also, she seems to sense that I want to take her pacifiers away and she is now stockpiling them.  I swear she hides them around the house.

Mike finally got her used to sitting on the grass.  No more whining, crying or screaming when her delicate feet touch the ground outside.

Banana!

Maddy has come up with her own way saying "banana."  First she cracked me up by doing whatever this is.


Then the silliness continued.  When I told her she was cheesing for the camera, she said "kee" because that's how she says "cheese."  And of course at the end she asked for a book, because she always always always wants books.

Bookkkkk

You know how Maddy suddenly loves books and calls them "buh"?  A few days ago Mike heard her put a "k" at the end!  She loves asking to read a "bookkkk."  Or "bookie."

Sibling Love

Ben was sitting on the bean bag chair.  Maddy climbed on top of him.  He was such a good sport for letting her.  And for the pacifier.


They're playing together a lot more, and sometimes they really get on each other's nerves.  There are certain toys that Ben just doesn't want to share.  So far the legos are safe - Ben likes them, Maddy doesn't.


Last week Ben thought it was fun to act like a baby.  He even requested a diaper and crawled around the house.  Maddy loved this game.

Speaking Words

Maddy has been using limited sign language to communicate for months.  She has started to speak words more over the last couple months.  She has been saying "bubble" all summer.  It's one of the few words she says regularly at speech therapy.  She likes to blow bubbles that much.  Actually, she has been clamming up less in front of her speech therapists.  They're really happy with her chattiness.


Since she says "buh-buh" for "bubble" and "buh" for book, it got difficult figuring out what she wanted.  Until she figured out the sign for "book."  Here she's pointing to the bookshelf.  I don't know where her sudden interest in books came from.  Just glad she finally likes them.


Her favorite TV show, which almost nobody has ever heard of, is "Oobi."  She used to ask for it by saying "beh," then "bee," and now she can say the "oo" at the beginning.  And now she asks for Oobi ALL THE TIME.

Can you tell what her new favorite word is?  Here she had just asked for Daddy, and when I told her he was upstairs she turned around to climb the stairs and go find him.  Yep, she's Daddy's girl.

Disney World

A few weeks ago we flew to Jacksonville to visit family.  Being only a couple hours away from Orlando, we couldn't pass up the opportunity to take the kids to Disney World.  We started at Disney's Hollywood Studios (used to be MGM).  In the building above, there were kids lined up to have their picture taken with Winnie the Pooh.  But as soon as our brood got to Pooh Bear, Ben got skittish and Maddy just freaked out.  Of course, as we were walking away Maddy pointed back at Pooh Bear and said "beh, beh!"

Next up was the Disney Junior live-action show which showcased just about every program that airs on Disney Junior.  Handy Manny is strolling by here, but he was always too quick for Ben to meet him.

Ben LOVED this show.  It's great for kids who are fans of the TV shows.  After this, Ben begged to get an autograph book and pen that lots of other kids had.  He didn't get a single autograph the entire trip.  He just wanted the book and pen.

For lunch we treated ourselves to a sit-down meal in a nice restaurant in the park.  I had some kind of fantastic salmon dish.  It's rare for us to get really good food when the kids are with us.  Which is always.

Maddy was already wilting from the heat.  It was nice and cool in the restaurant.  She amused Ben by chewing on the lemon from my iced tea and making funny faces when it tasted sour.

It was tricky to keep Ben content when we were in line at this next movie-themed ride.  The line led us into an auditorium where movie clips were shown on a big screen, something to keep people occupied before the ride.  But Ben got tired of standing and we took turns holding him.  He also didn't like how dark it was or how loud (and kind of scary) some of the movie clips were.  Maddy ended up falling asleep before we even got on the ride.  We were told by an employee that this ride was suitable for our kids, but he downplayed the part about a very loud gangster gun fight.  That woke Maddy up and scared Ben.  He did like going through a scene from the Wizard of Oz.  After that ride we went to a 3D Muppet show, the kind where bubbles get blown into the audience.  Both kids really liked that.

After the Muppets, Ben saw some Pixar characters signing autographs.  He stood in the line for a few seconds before saying he wanted to do something else.  Then he found a vendor selling a ton of Cars stuff.  He spent a lot of time picking out something to buy.  At this point Maddy was pretty much a puddle in the stroller.  We went through a lot of bottled water.   At the end of the afternoon, Mike and Ben used the Fast Passes they had gotten in the morning to go to a Buzz Lightyear-themed ride that Ben absolutely loved.  Great end to the first day.

Back at the hotel, we went to an Italian restaurant for dinner.  It was a great way to decompress.  Ben chatted up our waitress, and Maddy ate all the tomatoes off of Mike's salad.  And then there was cake.

The lobby of our hotel, a resort for military families vacationing at Disney.  It was awesome.  And while we had searched the Disney vendors to find a hat for Ben, we found one he loved right in the hotel shop.

Here's Ben with his Toy Story hat, trying to convince me he wasn't intentionally waking up Maddy.  She sleeps so much better in portable cribs than in pack-n-plays.

Maddy was a handful in the hotel room.  She constantly tried to get off the bed by herself.  She did the same with the couch and fell off of it once.  She opened every door and cabinet in this dresser.  Here she's pleased with herself for finding the hidden fridge.

On the second day we went to the Magic Kingdom... and I forgot to take my camera.  It was sunny, hot and humid (actually not bad for Florida in July, but Maddy and I can't take the heat).  Mike and Ben went on the Teacup ride once.  We all went on a Winnie the Pooh ride that Mike thinks used to be Mr. Toad's Wild Ride years ago.  But Ben was a little scared by how dark it was.  The guys went on some kind of racetrack ride.  Next they were going to go on a Buzz Lightyear ride, but Ben couldn't even handle how dark it was just standing in line.  They never made it to the ride.  Then they went on the Goofy Barnstormer ride, a little roller coaster that Ben loved so much he asked to go again.  At this point Maddy had had it; she was hot, sweaty, tired, and too uncomfortable to take a nap in her stroller while we waited.  So I walked around the park with her so she could get a little breeze and she feel asleep.  We took a break for some cold drinks and when Maddy woke up I gave her a lemonade slushy that made her very happy.  The guys went on some other rides (carousel, Dumbo, something else) and saw a show or two.  Then we all went on It's a Small World.  There was much pointing and squealing by Maddy.  Both kids liked it - a calm, gentle boat ride through colorful scenes of singing children.  Air-conditioned, of course.

We spent about 5 hours at that park and headed back to the hotel for a very late lunch.  The kids chilled out in front of the TV with juice boxes.  Mike took Ben to the hotel pool and Maddy napped.  Then we had a "silly dinner" of ice cream sundaes in the hotel's ice cream parlor.  After a good night's sleep, we headed back to Jacksonville.  

Big thanks to Mike for planning this whole trip, and to my cousin and her husband for helping to get us passes to the parks.  Our kids had a great first-time Disney experience!

20 Months Old

Miss Maddy hit the 20-month mark while we were on vacation in Florida.  I'll post more of those photos later.  Here's just one of her on the beach for the first time.

She loves dressing up in fancy clothes and headbands.  Here she wanted to wear *all* her headbands at the same time.

She's quite the doodler.  I'm trying to keep her drawings limited to paper and off of the furniture and cabinets.

Hey, it's a cat!  She still loves Calvin.  One time I saw Calvin actually enjoying being petted by her.

Levitating.

More doodling.  With lots of crayons.  On the dining room table (she likes to sit on our laps and pull herself up there).

This summer she discovered kiwi.  This is a good view of her chompers.  She's starting to bite her pacifiers so much that she's shredding them.  These pacifiers have got to go.  Operation Goodbye Pacifier commences soon.  It's a multi-phase project.

The goofball giving an even better view of her teeth.  She's using these toys - the walker and the exercise ball - a lot more by herself.  Thank goodness we have carpet in much of the house, because the more she tries to stand on her own, the more she falls down.  She mostly just cries, gets back up, and keeps going.

Ball. Ball. Ball.

She started saying "ball" a couple weeks back.  She still loves to take objects out of a container and put them back in.  And she still loves to share.  So this bucket of balls is her cup of tea.


This was after dessert one night.  That's why it looks like she's wearing chocolate ice cream as body paint.

Dinnertime

Here's part of a typical dinner at our house.  Maddy is aware of how amused Ben is when she throws herself back against her high chair, so she does it a lot now.  She must have been tired here because she was pretty low-key about it.  Sometimes she really slams herself back.  (That is part of why I'm thinking of moving her to a booster seat on a regular chair soon.)  Her high chair has a large tray that attaches to the front and is great for holding a plate of food.  But Maddy doesn't like the tray at all.  It's probably for the best, because the little space in front of her only holds small bits of food and I can take notice of how much she's eating.  She tends to eat too much too quickly and then throws up.  No amount of reflux medicine can stop that from happening.  Puke is a pretty typical part of our meals, happens at least a couple times a week.  I made the mistake of using the saying, "Her eyes are bigger than her stomach" and it totally confused Ben.  The explanation I gave just confused him more.

Looking Back: Decompression Post-Op

It's been almost seven months since Maddy's decompression surgery.  I was going through old videos yesterday and found this one from when Maddy was still in the hospital.  Things were so chaotic back then that I just forgot to post it.  It is truly amazing how quickly she bounced back.  And that quick recovery is pretty typical for this kind of surgery.  She was moving around on the second day.  When we got home, she almost immediately started getting back to her old activities like trying to climb the stairs.  She had a follow-up MRI a few months ago that showed things look good.  We're going back to the neurosurgeon this week for what I hope is the last neuro checkup for a while.

Push It

Keeping busy during a power outage last Friday (that's why it's so dark).


Today.  It's been a walker kind of weekend.

Story Time

Here we are reading a book called The Baby Goes Beep.  It was one of the books I had read a lot to Ben when he was this age.  Maddy likes books with cats and babies in them.  She also likes to rip the pages (hence the scotch tape on the table).  Here she is distracted several times by some crayons on the table.  Near the end of the book she does the motions for "smooch" and "shh."

19 Months Old

Miss Maddy Moo is 19 months old today!

She wasn't making this face until the camera was pointed at her.

She spent much of this month perfecting her bubble-blowing skills.  We don't know how she learned how to do this.  She just did it one day.

This month was a turning point in Ben & Maddy's relationship.  Ben is realizing that he has the power to make Maddy laugh.  Maddy is realizing that she has the power to irritate the snot out of Ben and that it's kind of fun.  Oh, and in the background of this photo, her favorite show Oobi is on the TV.  She asks for it by saying "beh."

She has been sticking her tongue out while drinking through a straw.  Apparently this is because of her low muscle tone.  She's also a bit behind in speech development because of low muscle tone.  I started taking her to speech therapy a couple weeks ago.  It's been going really well - no screaming from Maddy, and she's babbling more and has started saying a few more new words.  She's still doing great in her early intervention class.

One of her new words is "hat," although she just says "at."  I got her a new headband, and when I put it on her head she patted it and said "at!"

I was so happy to take the family to a cookout with our local LPA chapter.  Maddy was less happy.  She was okay until they did a group photo of the kids and she had a meltdown.  This photo was well after that, but she was still freaked out.

I found something she dislikes even more than group photos at a cookout: the bathtub.  Since she's been sitting up so well lately, I thought I'd try to do a "big kid" bath in the tub instead of in her reclining toddler tub.  Huge mistake.  After this photo, I washed her hair and she tried to climb out of the tub.

She put Ben's sunglasses on by herself.  Both the sunglasses and her pacifier are upside down.  She is almost as much of a goofball as her brother is.